Our beautiful, gorgeous little girl, Anna, has leukaemia. She was diagnosed on Monday 5 December 2011.

Anna is loving school and yesterday, for the first time ever, she travelled to school in her wheelchair in our new car.

Thank you Dragonmobility, for making such an amazing powerchair, thank you motability and Bristol Street Versa for the car, and getting it to us with all the complications along the way and thank you Mr Ryan Galloway, for your emergency mechanical expertise!

Another small but hugely significant step forward. X

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It’s been a great summer holiday –
Nathan has enjoyed his football coaching classes and outdoor activity days at almondell country Park. Anna has enjoyed Barnados summer club, days out with me and other family, had hospital stays, fractures and various other medical interventions.

Both have loved going away to Rachel house children’s hospice (an amazing place!), up north with granny and dad and, for the last week of the holidays, to (the wonderful) Crieff hydro with auntie Mary and her two girls (and Courtnay, Neil and the children). Thanks all for being there – it made it even more special.

My plan over the summer was to involve Nathan in as many energetic activities as possible, both to use up his never ending supply of energy and also ensure he was doing the things he really enjoyed as i feel he does sometimes miss out because of Anna’s needs. At the same time, I wanted to allow Anna to be as normal a little girl as possible, and do the same things as other 5 yr olds .

It’s generally worked out that way – although it seems impossible to tire Nathan out! Anna particularly enjoyed Crieff hydro, where she was able to go into the children’s club along with all the other children (up to 6 hours a day!), eat high tea with everybody, dance at the disco and laugh along with the magician.

However , it’s also been very, very hard work. Anna’s day time care needs over that period of time has been absolutely exhausting. Even Crieff Hydro, with 6 hours a day in the children’s club, was exhausting as I still had all the overnight care. Anna continues to wake several times every night asking to be turned on to her side or back, usually around 1 o’clock 3 o’clock 5 o’clock 7 o’clock. At the moment she’s tending to be sick both in the night and as soon as she wakes up. And Anna going to the toilet is always a huge effort for all involved – maybe more on this in a future post.

Yet we finally made it to the end of the holidays and Anna starts P1 tomorrow. It feels like a huge event, for all kinds of reasons. I have the same feelings as all the other P1 mums and dads but also I’m very aware that Anna at times seemed unlikely to make it this far.

So we are ready – or at least nearly ready – even though there have been several hiccups along the way. Her uniforms has been bought (after trying on numerous outfits due to her swollen stomach not fitting many things), her school bag is packed, the travel plans are falling into place (taxi company are in the process of ordering and installing the snapdragon lock down system for the car, and Anna’s motability vehicle is on its way), the medical room has been converted, a hoist has been installed and tested and a new P7 buddy chosen.

After a quick trip to A&E this afternoon, Anna now has matching casts on her legs for her first day at school. The left leg cast is on as a precaution after an accident today. X-rays showed no fracture but it will be reviewed on Friday at fracture clinic when the other cast is taken off, which is on following a fractured femur some five weeks ago.

Both Anna and Nathan are upstairs asleep. Tomorrow is going to be a big day – for all of us.